Friday, September 28, 2007

To your left is a picture of a lovely City in England. I’ve been there a few times, and it was great, really great, so please remember, what I’m going to say, has nothing to do with you, alright?

We all know that Mr NICE has done nothing to help doctors, and especially the great CBT KINGDOM, great as in great in blowing their own trumpets, to finally get the diagnose of ME right.

If you would visit the CBT KINGDOM, you will see a guard at the entrance, who is blocking the way for people with ME.

If you do manage to get in, don’t know why you would want to though, but that is another matter, then they will ask you one simple question about Oxford.

You know, Chief Inspector Morse and so.

The trouble is, he would have come up with a whole lot of very critical questions, and so he would not have been allowed entrance either.

Well in that very same Oxford, fifteen odd years ago, a flock of psychiatrists had a meeting.

They were losing many psychiatric illnesses to ordinary medicine, as we discovered that the cause of many psychiatric illnesses was actually a physical one.

And so the Flog of Psychos wanted to go to Spain, for a NICE, warm, and relaxing winter.

But a few of the malingering ones had a brilliant idea. They decided to hijack a neurological illness and change the whole concept of it.

Over a few beers, one of the older chappies mentioned that he was so tired lately, from all those depressed Brits, and a few young, up and coming members of the species, shouted ME.

And that was it, the OXFORD criteria were born.Tiredness only, why had it taken them so long to come up with such a simple concept???

They then hired a PR firm, that recommended bombarding every conceivable magazine with the same article, over and over again. Over and over again.

Continued exposure, as they call that, in the marketing world.

From then on, their world revolved around me, or should I say, them?

If you do manage to get through the door, they ask you if you are more than tired?

If the answer is yes, they send you on a journey to the DO NOT BOTHER ME DEPARTMENT, deep down in a basement, at an unknown destination.

And they have been writing so many essays with a slightly different title, with the same content, that the message has come across, just like their PR people said.

And now people believe that ME means just tiredness only.

The old chaps from the GOBSART Institute of Excellence (Good Old Boys Sitting Around a Table), have now joined them, because it was easier to write something their mates liked, so they could leave work early, and get back to the golf courses and their PUBS, or wherever the GOBSART Institute of Excellence, has their meetings.

But a few celebrities have now joined our battle.

I’m waiting to hear from Mr Clarkson to find out more about his ideas of what to do about these old chaps.

And now Mr MONTY, has mailed ME, to show his support, as well. Thanks Mr MONTY.

He still had an old video on his shelf, HOW TO DIAGNOSE SOMETHING PROPERLY, and he suggested to air that for the CBT CHAPPIES and their mates. So please old chappies, from the CBT KINGDOM, and the GOBSART Institute of Excellence, please take note.

Thursday, September 27, 2007

When our brain is not working, even a simple picture like this can be WAY TOO MUCH. Unbelievable, and if you haven't been there you think this is crazy. But what is actually crazy is that we try to CBT it back to normal. Instead of trying to find the cause and a CURE.

If you by the way think that only people with ME have a problem with their doctors, you might be very wrong indeed.

A recent study in the BJGP, the British Journal for GP's has shown that it takes an average of FIVE years with many tests etc before the average person with Coeliac, or is it Celiac, disease goes from a malingerer to a patient with a disease. FIVE years. Amazing. And that in a time where we CLAIM that we KNOW it All.

Even more so if you know that for this bowel disease there is ACTUALLY a diagnostic BLOOD test. You would only need to confirm this with an endoscopy, that is looking in the bowel with a flexible telescope and taking a small biopsy to check it out under the microscope. And how common is this disease? One in 300 to one in 1500 people apparently has it. The treatment is a gluten free diet and the problems go away.

Tuesday, September 25, 2007

I have just submitted a response to the BMJ, as some readers have kindly pointed out that I made a mistake. I could say it was my brainfog, I could say it was an overlook, and I could say I didn't know.

But all that is wrong, my brain had just shredded the other Australian guidelines as prehistoric and outdated.

There is however no excuse for an AUSSIE NOT TO KNOW that it should have been the SOUTH Australian Guidelines. Silly ME. So anybody who has pointed out my error, many thanks.

My rapid response to the BMJ was:

SORRY South Australia:

Can I please rectify my comments. And Dr Morris, the psychiatrist, has asked me to do the same on his behalf, that when we mentioned the Australian guidelines, this should have been the SOUTH Australian Guidelines (2004), these are available at: http://sacfs.asn.au/download/guidelines.pdfSorry about the mistake.

Monday, September 24, 2007

My brainfog was made a lot worse by lots of silliness, in and around my household, that is taking up a lot of energy, so I’m ever so grateful for his willingness to help me out.

Sometimes I wonder why anyone actually buys cars like this.

Eventually, of course, we arrive at the styling. In the same way that you can discuss the merits of Alain Prost, the four times Formula One World Champion, for hours, but at some point you have to discuss his nose.

Yes. It’s odd. I’ll grant you that. It looks like a car made up of old parts from Halfords. A mangled up blend of Postman Pat’s van, a Dolls house and a Fridge.

But here’s the thing. There is nothing on God’s earth more depressing than an MPV designed by people with the same philosofy as NICE.

That is, those who have an internet phobia, and don’t employ someone who is not afraid to ask for help, someone who will actually look elsewhere, to see what other people have already done.

So please do not hire a designer or someone else who actually knows something about the subject.

As you know, knowledge slows the process down, but as you can see, this is the prettiest and best car ever to hit our roads.

And Mr Clarkson assures me that he has ordered a third one, as he needed another garden shed.

Sunday, September 23, 2007

Okay, today is Sunday, and it is time to explain to the World, and to Mr NICE, what some of the ME symptoms entail. Now you could easily ask anyone with Severe ME to give you an example how their brain functioned before, and how it functions since they got ME. Now for people who have problems concentrating, problems with information processing or memory problems it is difficult to get this across to someone with a normal brain. I can fully understand that, as my brain was once firing on all cylinders and imagining that it wouldn’t; was unthinkable. But let me explain how my brain was for example, when it was so bad, that when I looked at a chess board, the knights, the bishops and even the pawns were moving way too fast. At that time I could not read, watch TV, listen to music, use a laptop etc. And as I couldn’t walk, still can’t as a matter of fact, and had all sorts of other symptoms, life existed of watching the ceiling 23/7 as I slept one hour a day max.

When my brain started to come back, I could look at a chess board for FIVE minutes max. and then I needed an hour to recover. Don’t ask me how it works, or better, how my brain didn’t work, but that was how it was. Now there are still many things my brain can’t handle, but it is much more enjoyable to focus on the things it CAN actually handle. Now the interesting thing is, the DUTCH CBT KINGDOM published a paper in 2005 that they had found brain abnormalities in ME patients. Yes I know, they keep on saying there is nothing wrong with us. But anyway, what did they find??

“We observed significant reductions in global gray matter" (gray matter is our brain) "volume in both cohorts of CFS patients, as compared to matched control participants.” And “These findings suggest that the central nervous system plays a key role in the pathophysiology of CFS. Our findings appear to provide a reliablesomatic marker of CFS, and suggest that the key to this disease might lay in the central nervous system.”

This same KINGDOM wrote in the journal of psychotherapy and psychosomatics in April 2007, you know that magazine about diseases you imagine you have, but you don’t, the same magazine that is publishing my study into the RATT therapy for Ruptured Achilles tendons, see some of my previous BLOG’s, and they informed us that 69% of ME patients were CURED with CBT. Now, if you know just the slightest about brain cells, you know that if they are dead, they don’t come back. If someone has a cardiac arrest for example, the first 3 to 4 minutes are crucial, as the brain needs Oxygen to survive. But apparently, with CBT THEY CAN CURE YOU, that is in 69% of cases, so they TALK your brain cells back from the dead. If this were true, there would be hope for many people with spinal cord injuries and severe head trauma, Strokes, Alzheimer’s etc, but unfortunately this CBT thingy doesn’t help brain cells to grow back.

Interesting if you then realise that this CBT KINGDOM’s basis for CBT is false illness beliefs, ie we think it is physical but it isn’t. But to come back to BRAINFOG, this is a funny sensation to say the least, but it can also be VERYDANGEROUS indeed.

DISCLAIMER: I do NOT take any responsibility whatsoever, if the next thingy is too much for your brain. It is your decision only, if you click on this link, just as it is your decision only, if you want to participate in CBT, and especially a GET program, as this can make things a WHOLE LOT WORSE. Even if you don’t like cars, or racing cars for that matter, if you can watch it though, it is short and VERY much worth it. I think you need a Windows Media Player but I’M not sure. Because remember, I know a LOT about ME by now, but I’m still a computer DUMMY. And please remember, if you suffer from hypersensitivityto NOISE, turn the volume down or turn it OFF COMPLETELY as I, do before you continue.

Saturday, September 22, 2007

I'm very proud, that after weeks of trying, my so called rapid response has finally been published on the BMJ site. Please remember though that so far all my very POLITE RESPONSES with regards to the recent four very misinformed articles in the TIMES have NOT been published at ALL. Nor have I received a response from my EMAIL to the EDITOR, that is, NOT the Science Editor as you can Imagine. Really strange if you think about it as they invite you to send them an email but then don't respond at all. I can imagine that they are busy so that they might not respond the same day or so. However, an automated response, saying we have received your mail and are dealing with it, or a similar text, would then be a possibility in this area of technology. But NOT for Mr TIMES I'm afraid. But I won't give up hope, maybe he is just like ME and he just needs a lot more TIME to do simple tasks.

Re: WHO is relieved by NICE?22 September 2007Dr Speedy, GP ME Place of work: MY BED.

Many things have already been said, but I would like to take this opportunity to add a few things: The recently finished Gibson Enquiry states that: “In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.” Furthermore it mentions that “The WHO (World Health Organisation) in Geneva holds an internationally recognised classification that ME is a neurological disease." And in February 2004, the then Health Minister (Lord Warner) made it very clear, in a formal written acceptance, "that the UK ACCEPTS the World Health Organisation classification of ME as a neurological disorder.”And now if you keep that in mind and just read the NICE guidelines on ME again DEAR MR EDITOR. More than a hundred pages and NOWHERE do they mention that ME is a NEUROLOGICAL illness. NOWHERE AT ALL.

Is it alright if I would use some of your comments on my BLOG?? If not or if you have any suggestions, please let me know. My email address is on the right hand side of my Blog. All the patients and carers for patients with ME, all the best. Can I take this opportunity to thank all the doctors who are working hard and trying to help us. And for Mr NICE, maybe go and visit a few patients with Severe ME, I'm sure you will get a totally different view and you will understand why the Canadian and Australian guidelines are so much better and also so much more helpful to get the diagnosis right. Because remember, people with ME we can't cure, but the many people who haven't got ME, see also professor Mirza's response onhttp://www.bmj.com/cgi/eletters/335/7617/446#top , who wrote that 90% of the patients he sees with a diagnosis of ME have something else with fatigue, we can ACTUALLY TREAT. And that sounds a lot better I can assure you.

Competing interests: Bedbound GP with ME.

PS: rectification: Australian Guidelines should read: SOUTH Australian guidelines. Thanks for correcting ME.

Yesterday I wrote about NICE-ness from the CBT KINGDOM and insurance companies. And as we all know, most insurance companies are VERY keen to receive our money but DO NOT want to pay out when needed. However, things can be completely different as well.

Many years ago I was on my way to work and stopping and going in traffic as is one of the delights of modern day life. Behind me was a NICE lady who was doing something else. Suddenly there was a loud bang and my car jumped forward. It took me a while to realise that I was rear ended. It was a bit like getting the diagnosis ME, you don’t think it can happen to you but it did. We both got out of our cars, and I knew straight away that she didn’t work for the CBT KINGDOM as she said, I thought you were driving but when I looked closer it was easy to see you had been stationary for quite some time. So I’m very sorry. So she acknowledged she had the diagnosis wrong and apologised. Very strange phenomenon. If you however read the CASEBOOKS by medical protection societies and so about medical errors, they will always advise doctors to say sorry if they got it wrong. If you don’t believe ME, just contact the MPS (Medical Protection Society) or MDU (Medical Defence Union).

Even stranger was what happened after the accident.My car was pretty much undrivable, but I worked in a two man practice, with the other doctor on holiday. So I NEEDED my car for home visits etc. So what did the insurance company of that lady do??? They actually phoned me up almost immediately, asked for my work address etc and when I explained the situation, they send people round to pick up my car and bring me a replacement at the time convenient for ME. So at the end of my morning surgery, before I had to do my home visits, they came by, as promised, with another car for me and they took my car to get it repaired.

I have recently contacted this company and they assure me that there advisors do NOT work for the CBT KINGDOM, nor do they want to have anything to do with such an organisation. Their philosophy is simple, if their clients have a problem, they have an OBLIGATION as an INSURANCE company to help get things sorted as soon as possible. So PLEASE take NOTE Mr CBT KINGDOM and the company/companies you advise.

Friday, September 21, 2007

Just a few interesting quotes from the MAGIC CBT KINGDOM and then see what you think.

“Referral to ‘specialists’ should be avoided as they can entrench illness behaviour."

So if I read this carefully, they say that there is no point in seeing anybody at the MAGIC CBT KINGDOM if you have ME, because CBT doesn’t help and it will actually make us WORSE.

If his Magic CBT Wand would help, we would all get better wouldn’t we, and no entrenchment and so. If you just read it again, you will see that he also says that we LIKE being ILL. We WANT to be ILL actually.

More NICE-ness from the MAGIC CBT KINGDOM: “Many patients receive financial benefits and payments which may be contingent on their remaining unwell. Recovery may therefore pose a threat of financial loss."

This is also called SECONDARY GAIN by psychiatrists, meaning that in their delusional minds they think we gain something from being ill.

Right, okay, just a few tiny scenarios. A twelve year old gets ME, he or she, was one of the brightest pupils in his/her class, and wanted to become a PSYCHIATRIST. How much do they earn??

Well, with some private work, for example being the medical advisor of INSURANCE companies, advisor to the MOD (Ministry Of Defence) and so, he would earn a VERY GOOD living. But instead he spends his days in BED.

Say he would earn a HUNDRED THOUSAND POUNDS PLUS if he would be this psychiatrist, but instead he hasn’t improved one iota, and is still bedbound and on Incapacity Benefits.

“How much is Incapacity Benefit?Incapacity Benefit (ICB) is payable at three rates, depending upon the length of time you have been unable to work. The basic rates below are from April 2007, and they usually go up each April.

Short-term lower rate (for first 28 weeks of being unable to work) - £61.35 a week.Short-term higher rate (for weeks 29-52 of being unable to work) - £72.55 a week.Long-term rate (for after 52 weeks of being unable to work) - £81.35 a week.”

So, instead of, lets say one hundred and four thousand pounds a year, which equals TWO THOUSAND POUNDS a WEEK, as he would at least earn as this psychiatrist with all his other jobs, he gets £81.35 a week.

He has been bedbound for ages remember, and hasn't been able to work or even do his school work, to get his GCSE’s, or any other diploma. Remember, who were most at risk for ME? Teachers, doctors and other health care workers.

So what does the average teacher earn??£ 26,000 pounds (figures from 2002 !!!) but I use them, as there are 52 weeks in a year, so it is easier for my brain to do the maths. So they earn five hundred pounds a week, have a NICE social Life, do a job they like etc.

Or what if this young Boy was signed by Man U at the age of NINE, as the next MICHAEL OWEN or WAYNE ROONEY, as he loves sports and happens to be very good at it. He would then go on to earn MILLIONS playing the game he loves????

Remember, he is getting £81.35 a week, he is now twentyfive, still bedbound and still lives with his elderly MUM and DAD.

Because he needs help with almost anything. Girlfriends and so, going to a NICE game of rugby or football, going for a run, an evening out with his mates etc???

All down the drain thanks to ME. Another life destroyed before it even started, and the BIG EARNERS at the CBT KINGDOM, continue to spread their so called wisdom.

So what is this young, bedbound Michael or Eileen, remember he/she, has been bedbound for many many years, and might even be BEDBOUND, or severely disabled for LIFE.

So what is he getting?? Yes, your MATHS are spot on. £ 81.35 a week, equals just over FOUR thousand pounds a year. So a VERY GOOD reason indeed to be ill.

How long do you need to study to become a psychiatrist and come up with this sort of utter NONSENSE??? But SIMPLE maths and COMMON SENSE is apparently NOT a requirement to become a MEMBER of the CBT KINGDOM.

Now you might think this is it. But you are VERY WRONG indeed. Remember, the CBT KINGDOM also work as advisors for a VERY LARGE INSURANCE company that deals with income protection due to ILL HEALTH. And what where they doing in November 2001???

They had a conference and the subject was:‘Malingering and Illness Deception.’ And the idea was not only that people with ME are MALINGERERS and trying TO DECEIVE you, but also to reclassify ME as a psychiatric disorder.

As a change in classification would save the insurance industry millions of dollars/pounds. They adopted the bio-psychosocial model, which basically means we are all NUTTERS.

“The solution is not to cure the sick, but a ‘fundamental transformation in the way society deals with sickness and disabilities’, as in, DO NOT HELP THOSE WHO CAN’T WORK, STOP their BENEFITS.

Interested in more NICE-ness from these guys???

“Sickness is a temporary phenomenon. Illness is a behaviour.” Again psychobabble for saying that we are MENTALLY VERY ILL. But if you are that MENTALLY ILL as they claim, you must be so CRAZY that everybody could see that.

What is the whole IDEA of this gang?? Not only to stop payments by the insurance companies, but also to stop Incapacity Benefits to severely disabled people.

I would love to be up and about and be back at work, back running again and so, and that is what I’m aiming for, but between then and now it helps a lot if I just get some money to be able to EAT and so. Aids my recovery as well, if I don’t have to worry about FOOD.

Uhum, as you can imagine my ICB is so much LOWER than my normal pay that my savings for a NICE holiday with the family, or to replace my seventeen year old car at some stage, have disappeared quicker than you can say YES.

Even keeping afloat on ICB is not easy. So instead of aiding my recovery, they want to stop ALL payments to people with ME. Will they stop all payments to other people with disabling mental or physical diseases who can’t work as well??

It might be good to bring up the case of a guy in the US who had a TINY problem, thanks to the CBT KINGDOM, with his insurance company. They refused to pay him for EIGHT years. And guess what, he disagreed and took them to Court.

He not only won, but was paid the outstanding money with interest and a bit of extra cash for the inconvenience caused by this SILLY insurance company, and its medical advisors who have their brain turned off. If I were the company I would actually sue my advisors!!!!

“Result:Jury verdict.Jurors found that the insurance companies had no reasonable basis to deny Merrick's claim and awarded Merrick $1,147,355 for past unpaid benefits. They also awarded him $500,000 for emotional and mental distress.

After finding that the insurance companies acted in bad faith and with "oppression, fraud or malice," the jury ordered Paul Revere Insurance to pay $2 million in punitive damages and UNUMProvident to pay $8 million in punitive damages.” (He had an Insurance with PR which was a subdivision of UNUM and acting on their orders.)

And stopping all payments is what they are after, supported by the CBT KINGDOM, no MORE money for disabled people who WANT TO WORK but simply can’t (temporarily).

A psychiatrist should then KNOW that to aid recovery it helps if you can use your energy to get better instead of fighting silly insurance companies advised by even sillier SO CALLED MEDICAL ADVISORS. More NICE-ness from the KINGDOM another time.

Oh, I completely forgot two things:The recently finished Gibson Enquiry states further that: “In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988.”

Furthermore it mentions that “The WHO (World Health Organisation) in Geneva holds an internationally recognised classification that ME is a neurological disease."

And in February 2004, the then Health Minister (Lord Warner) made it very clear, in a formal written acceptance, that the UK ACCEPTS the World Health Organisation classification of ME as a neurological disorder.” But hey, NOT of any interest to the CBT KINGDOM whatsoever.

And now just read the so called NICE guidelines on ME again. More than a hundred pages and NOWHERE do they mention that ME is a NEUROLOGICAL illness. What did you say, they call themselves INDEPENDENT, yeah right.

Thursday, September 20, 2007

Mr Clarkson promised me that he would come up with a solution to the recent bunch of misinformed and crappy articles in the Times about ME. And he has just send ME what we should do. Or better, what he is doing about it. Many thanks on behalf of Dr Speedy and everybody with ME. He also mentioned that this is the best way of coping with problems. No need for psycho nonsense. He also has an idea what to do about the CBT KINGDOM, but it is a bit more drastic he has assured ME.

A few years ago an article appeared in the BMJ and the conclusion was that 50% or so of doctors DID NOT believe ME existed.

The reasoning behind it was that all routine bloodtesting and so is normal in ME.

Now interestingly enough, no one seems to know about Dr Ramsay and his little but very informative book about ME.

If you can’t remember who he was, he was the Infectious Disease Consultant who worked in the Royal Free Hospital, when they had an outbreak of ME in 1955, and they had so many nurses and doctors (most of them were males in those days, so please take note of this Mr CBT!!!) that they had to close the hospital for months.

There are many very interesting and important things in his book.

Not only did he write a medical account of this outbreak, but he also dedicated his life to this horrible illness.

Now for the NON believers, just have a look at this.

“Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks are the result of hypoglycaemia and we are reminded of three young women in the outbreak in Finchley who were admitted to hospital in an unconscious state, the result of acute hypoglycaemia.”

And how do you treat this??

With an intravenous infusion, see picture. So no CBT, or other psychobabble.

What would happen if a healthy person would not eat?

Just remember the many people who went on hungerstrike for whatever reason.v They get thinner and thinner and can survive without food, if they just drink water only, so no calories or nutrition, for 50 to 60 days.

That is, because a healthy body has two hormones regulating the sugar level in our blood.

And if we don’t eat, we will start to “EAT” our own body up.

But a healthy person can try as hard as they like, they won’t go into a hypoglycaemic coma.

The only other person who can manage that, as well as an ME patient, is an insulin dependant diabetic.

Did Mr NICE read this very informative BOOK???

Well, there is nothing in his NICE report indicating they did.

Did the MAGIC CBT KINGDOM ever read it???

They might, but they have never shown any indication whatsoever that they learned anything from it.

Far from it.

There are lots and lots of other interesting things in this book, it only cost less than ten pounds so you would think that an Institute, that calls themselves something of Excellence, and that is writing a guideline about ME, that they at least have a look at this book.

It is only 61 pages of text, and it is just slightly larger than a pocketbook.

So for someone with a healthy brain, how long will that take to read??

But NOT INTERESTED were Mr NICE and his palls at the CBT KINGDOM and in the Government. Remember, they went into a hypoglycaemic coma.

Yes I know that the CBT KINGDOM calls ME patients hypochondriacs, hysterics, malingerers, people who want to claim benefits, and all sorts of other NICE-ness.

But we are talking dear Mr NICE and dear Colleagues, and even dear MAGIC CBT KINGDOM, about hypoglycaemic coma.

That is just a bit more than the patients you tend to see in your KINGDOM and say they have ME when all they have is fatigue or a mental health problem.

Those are obviously problems that needs dealing with, but they have nothing to do with ME.

And why does this happen over and over again at the CBT KINGDOM???

Because getting the diagnosis of ME right is impossible at the CBT KINGDOM.

Why???

Because it is NOT in their interests.

They want money, lots of it, and that the patients suffer as a consequence is not important at all.

NICE filosofy, but I’m afraid very true indeed.

And what did Dr Ramsay say about this????

“The basic essential in treatment is CORRECT diagnosis.”

And please remember, doctors who think we can test for everything and we know it all, what Dr Saunders, a GP from Australia wrote in the BMJ rapid responses about ME, and which he kindly mailed to ME to use his response in my BLOG:

“Last TIP: remember, even if you don't believe it exists, you might still get it yourself.

There are studies suggesting that teachers and doctors are more at risk.”

Wednesday, September 19, 2007

The following article appeared in the Journal of Psychosomatic Medicine in 2005.

So dear Mr NICE, please take NOTE. You should have known this. Why didn’t you?

Because it was written by the TOP DOG from the CBT KINGDOM himself, and neither the GOVERNMENT, nor Mr TOP DOG, wanted anybody to find out. So that’s why it wasn’t published in the LANCET, or the BMJ.

Just read and enjoy. And remember, what was part of his Hippocratic Oath???

“I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.”

The article was called:

“The Placebo Response in the Treatment of Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis.”

Before you read on, what is the placebo effect???

The placebo effect occurs when a patient takes “a sugar pill” together with the suggestion from a doctor that the pill will help or cure his condition.

This effect has been known for years. When researchers discovered opiates made by the body itself, the so called endorphins, the placebo effect got a whole new meaning and led to a new path of research.

When patients, who claimed to experience pain relief after receiving a placebo, were injected with naloxone (a drug that blocks the effects of opiates), their pain returned, so it became clear that the placebo effect may be (partly) due to our body releasing endorphines.

Now read the article and don’t fall from your chair. So please make sure you are seated properly in a safe environmentBEFORE you start.

I will NOT take any responsibility for any accidents if you do not do so.

“Objective: The placebo response is conventionally asserted to be high in chronic fatigue syndrome (CFS) because of the latter’s subjective nature and obscure pathogenesis, but no systematic review of placebo responses has been undertaken.

We report such a study. Patient expectation is known to be important in the placebo response. It is also known that CFS patients attending specialist clinics often have strong physical attributions regarding causation and hence skepticism about psychological or psychiatric interventions.

If so, the placebo response in CFS may be influenced by the type of intervention according to its perceived rationale.

We aimed to estimate the summary placebo response in clinical trials of CFS and to determine whether intervention type influences the placebo response in CFS.”

“Conclusion:In contrast with the conventional wisdom, the placebo response in CFS is low.Psychological-psychiatric interventions were shown to have a lower than placebo response, perhaps linked to patient expectations.”

The exact figures were: Normally 30% placebo effect is average among all medical conditions!!

However, in this study the placebo response among those with ME was just 19.6%. The study showed that the response to CBT was only 14%.

So what was the conclusion from the TOP DOG from the CBT KINGDOM?????

A PLACEBO was MORE effective than CBT!!!! Was this message send on to Mr NICE or the rest of the World???

NO, only to psycho people who DIDN’T want us to Find out. Thanks for sticking to the HIPPOCRATIC OATH; is that’s why some people now call it the HIPPOCRITIC OATH?????

Tuesday, September 18, 2007

Please keep in mind, when you read this next BLOG, that this is what HEALTHY children look like, they sing in a choir, like doing sports and like going to school. This might sound very obvious, but if you read on, you will soon find out it isn't for a medical consultant and a nurse consultant, both working with CHILDREN, in the MAGICAL CBT KINGDOM for KIDDO's who write their own colum in the TIMES. Yes, the TIMES again. This time, on 14.9.07.

It is Saturday morning, and Mrs Young picks up yesterday’s Times, and with a cup of tea she sets herself down to have a NICE and quiet hour while Anna, het twelve year old is playing tennis, and Jane, her nine year old, is still in bed.To her surprise there is an article by a doctor from London in the paper about ME. The article is called:“What is chronic fatigue syndrome or ME?Child health experts at Great Ormond Street Hospital talk about chronic fatigue syndrome, probably the most common medical reason for absence from school.”

It starts of all right by saying:“The condition is typically triggered by a viral infection from which the young person does not recover in the usual way.”But then things start to get a bit tricky. “only a few seem to be helped by allergy treatments.” Mrs Young, who is not a health care professional, but has two kids and common sense, starts to wonder, so is ME something like hayfever then? Mrs Young is particularly interested in this article, as her daughter Jane has not been her usual self lately. She takes a sip of her coffee and reads on.“Those affected may be unable to go to school, lose contact with peers, and become generally less able to be involved in their usual activities.” And suddenly she has to think about her own daughter again. She had the flu or something and has been in bed ever since.

“When should I seek medical attention? It's a good idea to see your GP if the symptoms continue for more than three months.” But not to worry, even though Jane, who is almost ten, hasn’t been running around like a normal nine or ten year old, she has only been in bed for two months. So Mrs Young decides to wait another month, as that is what the doctor, a consultant by the way, says. And that she has missed school for two months, no problem, absence of less then three months, or any illness, less than three months, can’t be anything serious. At least, that is what this doctor says.

“What we do know is that looking for a cause is not useful.” At this moment her husband walks in, he is an engineer, and has just solved the problem with the washing machine. He sees the comment, and says, GOOD doctor, looking for a cause is not useful. Why do you read that CRAP, as Jeremy Clarkson recently said in the same paper? Well look, answers his wife, it is about our Jane.“There isn't a cure for CFS/ME.” And Mrs Young thinks, yeah, I read that somewhere before when my auntie’s friend had ME.“How successful is treatment? Most young people on a rehabilitation programme recover within 12 to 24 months.” Now Mr Young bursts out laughing. So are these doctors magicians or so??? First they say there is no cure, and then they say they cure them with a rehab programm. Who in his right frame of mind would believe these storytellers? What did you say dear, it is NICE? Oh, you mean, NICE, that so called independent Institute of Excellence, believes this?? And what is the medical word they use, something to do with evidence?? Yes, thank you dear, so this is what doctors call evidence based. So there is no cure but there is a cure. Can I read that article as well and show it to my boss, he needs to have a laugh, you know how difficult his life has been lately.“What's the outlook? Most young sufferers who take active steps towards recovery in a planned and gradual way do return to a normal life.”You see, says Mrs Young, there is NO cure, but in the MAGIC CBT KINGDOM for KIDDO’s they have a magic wand. But it will only work, and get you better, if you are not a lazy git. Sorry dear, I wasn’t talking about you.So what do you think dear, shall we take Jane to the doctor and be sensible, or should we wait till she has been ill, and in bed for more than three months as this children's doctor says we should do? Isn't it so that, the sooner you do something about a problem, the easier it is to solve it?? Didn't that NICEY thingy say something like that, you know, the sooner you recognise ME the better the outcome???

I mailed Mr Clarkson a few days ago and he replied by saying that “In a list of the five most rubbish things in the world, I'd have America's foreign policy at five. Aids at four. Iran's nuclear programme at three. Gordon Brown at two and" the Science Section of the TIMES "at number one. It is that bad.” He also informed me that he used to have a VIRGIN account when he was single but he changed over to HOTMAIL, as he thought it would spice up his life. According to him, it is a lot of mail but nothing HOT at all. But he now has discovered that they also employ BELINDA MESSENGER and he invited me last night to use her help. We started sending her backwards and forwards between the Clarkson Ranch and my bedroom, and he mailed me a short, but interesting story.A few years ago he was out drinking with the guys from the Times Science Section. He was feeling miserable because he had just finished testdriving a car that he described as “you don’t want to think what would happen if it bumped into a lamppost. Also its name sounds like a disease." And at that stage the people from the Science Section started saying things like, just copy what the manufacturer says, and you be out drinking and clubbing with your mates before you know it, instead of having to read, think and spend ages on the internet before you can finally write up a report that no one will like. So just copy and all will be fine.Mr Clarkson then told them that he was taught that a proper journalist was curious by nature, didn’t believe things at face value and wanted to form his own opinion to inform the readers well instead of selling them a lot of hot air. The Science Editor and his mates all burst out laughing and Mr Clarkson was starting to feel really miserable. At least at Top Gear the audience would listen to him.But he was saved by his mobile. FIAT called and was sending a private plane to pick him, and a few other journalists, up for the presentation of their new car in Italy. He thought Italy, Fiat and Ferrari, NICE wine, beautiful cars and so the petrol in his veins was starting to flow really fast and he got all excited. A bit like you, he said, or is it ME people, when that Institute of Excellence was starting to tell the world they would do a report of some sort about ME.He had Champagne and caviar on his flight, a wonderful meal in one of the best restaurants in Italy, and the girls were just breathtakingly beautiful. After lunch, all journalists were gathered in these large majestic gardens, and all they saw was this group of the most beautiful women in the world. But there was no car to be seen in miles. Suddenly all these girls started to disappear in the ground and out came a car. To increase the suspense a bit, it was covered in an enormous Italian flag. Vivaldi was playing his four seasons and when he changed from winter to spring, two girls appeared out of nowhere and removed the cover. At that moment, he had to think about the information leaflet Fiat had been handing out to all the journalists, and he had to think about the advise that The Times Science people had given him. Just copy the brochure and all will be fine. But as soon as he saw the car, his journalistic mind took over.

"This is a very ugly car. So ugly in fact that you’ll want to get inside it and shut the door as quickly as possible. But sadly when you are inside it’s even worse. If it were a creature, it wouldn’t be a lion or a praying mantis or even a chimp. No, I think it would be a wasp — useless and hateful in equal measure. I’d love to meet the man who styled the exterior, to find out if he’d done it as some sort of a joke. But mostly I’d like to meet the man who simply didn’t bother at all with the interior. Because looking at that dashboard gives you some idea of what it might be like to be dead." And he said, I get the impression from what I have read and so about the NICE guidelines and ME, that NICE have done a similar job as Fiat. Just look and see for yourself. But he assured me that he would get back to me in the next day or so to let me know what we could do about this.

Chronic fatigue syndrome (American for ME) is associated with chronic enterovirus infection of the stomach;Journal of Clinical Pathology 30/8/07, by Doctors Chia and Chia

ME can be triggered by a number of treatable infections, and previous work showed that 50% of ME patients had raised neutralising antibody titres for 10 of the top 20 enteroviruses isolated in the USA.

Enteroviruses cause acute respiratory and gastrointestinal (abdominal) infections, and like to grow and hide in the central nervous system, the heart and our muscles.

At the time of oesophagogastroduodenoscopy (looking in the stomach with a flexible tube), the majority of patients had mild, focal inflammation in the first part of the stomach.A total of (82%) stomach biopsy specimens stained positive for enteroviruses.

This suggests a strong association between enteroviral persistence/infection and ME.

A large number of patients with ME may have a chronic, widespread form of enteroviral infection, which could be diagnosed by stomach biopsy.

Collectively, these findings clearly support the concept of viral persistence in human tissues, which may be accountable for diverse manifestations of ME.

Muscle biopsy specimens taken from ME patients, and postmortem examination of brain tissues from one ME patient, years after the initial infection, also demonstrated thepersistence of enterovirus. Collectively, these findings clearly support the concept of viral persistence in human tissues, which may be accountable for diverse manifestations of ME.

This finding suggests that enterovirus infection caused the abdominal symptoms and ME, and the persistence of the virus years later was responsible for the patient’s symptoms.

There are a few interesting things about this article, for example:1. There are indications that a virus is the cause of the disease and the reason why it persists as viruses tend to hide in our own cells.2. This survey was only done because one doctor did not believe that it was all between the ears when his own son got ME.3. Dear Mr Science Editor, more CBT from the MAGIC KINGDOM, or would you think that more research might be a better idea??

Now I always thought that there were a few things journalists had to do before writing an article. For example:1. Read about the subjectbefore you interview or quote someone, so that people can’t sell their baloney with the journalist just writing it down.2. Ask critical questions.

Apparently this is NOT the function of journalism anymore. They are just a medium to print whatever the CBT KINGDOM wants. I used to love reading Jeremy Clarkson’s stuff in the Sunday Times and it might be an idea for you, Mr Science Editor, to speak to him, as he seems to have a more critical mind about things than you. At the moment you just seem to be nothing more than a photocopier for the CBT KINGDOM. Apparently the title of Science Editor of The Times doesn’t mean anything anymore, just as we have seen with the BMJ editor. It doesn’t mean that you can spell the word critical reading, or have a clue what it is.

Just have a look at a few things the Science Editor wrote, might help to have a wonderful day and cheer you up.“Cognitive behavioural therapy (CBT), which seeks to improve the symptoms of illness by changing patients' attitudes, thoughts and feelings, often strikes people as flaky.”

“Few psychiatrists, however, dispute that CBT can be helpful to patients with depression, anxiety and even schizophrenia.” Yeah, surprising, a psycho therapy that helps people with a mental health issue, isn’t that what it is all about? Funnily enough, few orthopaedic surgeons dispute the fact that my RATT (Ruptured Achilles Tendon Therapy, see my previous BLOGs) therapy works for ruptured Achilles tendons. I have phoned a few to suggest to treat these patients with CBT in the future. All I got as an answer was so much laughter that I might become a stand up comedian. All I have to do is use texts from the CBT KINGDOM and The Times and we all have a jolly good night.

I must say that I like the remark that “Cognitive behavioural therapy (CBT) is flaky”. Maybe an anti-dandruff shampoo might be of help?? Might even try it for depression, anxiety or schizophrenia and see if it works. What do you think, good therapy for these problems or will patients dispute the use of anti-dandruff shampoo for depression etc??

Professor Trudie Chalder, of King's College London, announced that it (=CBT) can help people with type 1 diabetes.” These are people who NEED INSULIN. No insulin means they are going to die. But from now on I will prescribe CBT instead of insulin. How quickly will this bring me before the GMC (General Medical Council) do you think??? But I will state there that I was just following Professor’s Chalder’s advise. And what will you say if it was your son, daughter or partner who died because I used CBT and not insulin?? Thank you very much, I’m sure.

“Though her study has not yet been peer reviewed or published.” Doesn’t make a difference, no study from the CBT KINGDOM will ever be peer reviewed, it will just be published. Much quicker and easier. And if someone will make critical noises, they will just ignore those. Let me explain, peer reviewed means that others, NOT from the same institute, will read the article CRITICALLY and point out mistakes etc. One mistake the CBT KINGDOM makes over and over again is that they call ME CFS but they are actually just talking about people with chronic fatigue, so tiredness ONLY. As the CBT KINGDOM has friends at different medical journals, their articles are NEVER peer reviewed. The principle is simple, I do something for you and you do something for me, and so that saves a lot of time for the editor. If you think that only applies to ME, just have a look at my BLOG called:http://niceguidelines.blogspot.com/2007/09/nasty-processes-produce-nasty.html

It is about UTIs (Urinary Tract Infection) in children, and the enormous outcry, under paediatricians and kidney specialists, about the recent NICE guidelines and the editorial in the BMJ saying how lovely these guidelines were. Did the Editor have a critical look before he wrote his editorial? Just read my BLOG and you will not only know the answer but a whole lot more.

“The biology of cancer and diabetes is quite well understood, yet there is evidence that CBT can help and many patients are keen to have it. It is unfortunate that people with CFS do not think likewise. To embrace the one treatment that has been shown to be effective against their illness does not mean it is imaginary.” I really like this comment. The science editor has done his homework. He says here that CBT is an imaginary therapy, so just make believe, so even he thinks it doesn’t work, or does he mean something else??

So would you really think Mr Science Editor, that this hokus pokus therapy is as effective for cancer or diabetes as for example insulin or an operation to remove the cancer? I certainly agree. Just leave the cancer in place and revert to CBT; 12-16 sessions of talk therapy and if I would be the cancer I would run a mile as well. Now if you would be the cancer patient, would you see me for CBT, or go to a proper specialist? Oh yes, there will be people who need help coping with a horrible or even terminal illness, strange don’t you think??? But a good friend or partner and a good GP is usually all they need.

And “It is unfortunate that people with CFS do not think likewise,” you probably mean, it is unfortunate that the CBT KINGDOM, and you as a Science Editor, have no idea what ME is. But hey, we are all tired at times, just like people with ME right? Just like people with Alzheimer’s are all a bit forgetful. Or is that a misconception? We would obviously think likewise, if there would be a point in this CBT business for people with ME. Silly idea, I know.

I must say, you can write NICE sentences, unfortunately, that is all they are.

“To embrace the one treatment that has been shown to be effective against their illness.” If this was true Mr Science Editor, all people with ME would be RUNNING, if we could walk that is, to the CBT community to get this MIRACLE CURE. Unfortunately Mr Science Editor, it works as well for ME as it will help you grow your vegetables in your garden. If you would just read a few comments on the recent NICE guidelines either on my BLOG, or on the rapid responses on the BMJ site, you would have actually known something about ME. I know, just like with NICE itself, knowledge works counterproductive and would mean you would waste time on reading and especially critical reading etc, whereas just copying the remarks from the CBT KINGDOM is easier and saves you a lot of work and time. Does it make for good journalism? I’m afraid LOUSY is the word that springs to mind. Just ask yourself one little very simple question, even NICE acknowledges this fact. Why is it that we have people with severe ME who are bedbound, dependent on others for all sorts of things and NOT ONE CBT person has done a trial if CBT will cure or help these patients? Well let me help you out a bit. I’m one of those lucky people, and I have actually tried this hokus pokus therapy, because that’s all it is. It’s because it would show that CBT is just a lot of HOT AIR as you would probably call it.

If you would just Google a bit, or even mail me the next time, before you write these so called editorials, you might be well informed for a change, and it would only take you a few minutes to be up to date. You might even be able to ask a critical question or so, as one would expect from a journalist or Editor.But apparently, you prefer the same principles as the CBT KINGDOM. The less you know about the subject the easier it is to have an opinion and write about it. But you have more interesting things up your sleeve.

“Even when diseases have a clear physical cause – a virus, as in HIV, or an auto-immune reaction, as in diabetes or arthritis – psychological factors can have a major effect on outcomes. Compliance with treatment regimens, diet and exercise, and background mental health are often critical to a good prognosis, and CBT can improve all of these.” Dear Mr Science Editor, all you need with these conditions is common sense. Yes, if you have a positive outlook on life that will help, but do you really need CBT for that? A NICE talk with a friend, a NICE game of football, a NICE meal, a romantic evening etc are more beneficial than these psycho people. But they want to earn a living and have their name in the spotlight. And thanks to people like you, who believe everything at face value, they do succeed.

Let me ask you a question, does the Times want to be a proper and serious newspaper or is nonsense enough?? Isn’t REAL journalism about trying to find the answer behind the answer. To get to the bottom of a problem, or was that only a principle applied by journalists who unveiled Nixon and his Water problem?? I know, that took them a lot of time and effort. Much easier to copy and write everything down, so you can be in the PUB to have a drink and watch your favourite football or rugby team on time. All that digging and reading and so, it is a bit like medicine, I like medicine and so, but it is a shame that you have to see patients as a GP. Now would you copy such a comment, or would you start thinking, and maybe have the urge to ask me a critical question? But be careful, the CBT KINGDOM is known for it’s severe shock like reactions to critical questions. And I might adopt a similar approach.

“It is decidedly not a treatment that can help only when illness is all in the mind. That misleading impression, however, still inspires hostility towards CBT among people who might benefit greatly. Chronic fatigue syndrome (CFS) is a case in point. The National Institute for Health and Clinical Excellence has recently recommended CBT and a related strategy, graded exercise, for the condition, on the back of good randomised clinical trials that indicate a benefit. There are no other therapies for CFS with such good evidence in their support, yet some patient groups have reacted with anger.”I’m afraid Mr Science Editor, GOOD randomised clinical trials for CBT do NOT exist. Like I said, for starters they DO NOT even get the diagnosis right. But have a look at a recent so called randomised CBT trial published in April 2007, in the journal for psychotherapy and psychosomatics. Yes I know, the place to be for a NEUROLOGICAL illness, my article about surgery for ruptured Achilles tendons will appear in their next issue. But what did they say? They informed us that they CURE 69% of patients with ME. Now, even if you believe the NICE guidelines Mr Science Editor, you will see that they will advocate CBT to COPE with ME. So even NICE says, without using those words, that CBT is rubbish. But I agree with you, you would have to read their report, instead of just looking at the conclusion. TOO MUCH EFFORT FOR BUSY EDITORS. I fully agree. Your counterpart at the BMJ (British Medical Journal) shared your view. Just copy and you could be on the golf course or so after lunch, instead of doing a proper job.

“For these critics, CBT is part of a medical crusade to write off their condition.” As I said before you have a NICE way with words, shame that you don’t know what you actually talk about. Do you actually know what the CBT KINGDOM says about people with ME?? No, I thought NOT. We are all malingerers, hypochondriacs, people with personality disorders and more NICENESS. I wanted to write a few of these quotes in a BLOG but then someone mentioned your glorious articles so I had to divert. For starters, CBT is a way by the CBT KINGDOM to write ME off as a psycho illness, their TOP man has been trying for years to get it marked as a mental illness, and he is still trying, even though the WHO has classified it as a neurological illness for decades. Secondly, like I said before, many people with ME have tried CBT, just as we have tried homeopathy, Chinese medicine, acupuncture, orthomolecular medicine etc and you know what? They are all NICE ways to pass the time, NICE ways of hoping for a remedy, and all might work for other problems, but they do NOT work for ME. Full stop, unfortunately.

I also like your following comment, top notch.“It is unfortunate that people with CFS do not think likewise. To embrace the one treatment that has been shown to be effective against their illness does not mean it is imaginary.”

If you would just have a look at the BMJ link I placed earlier, and then READ the comment about the Belgium CBT clinics, then you know it all Mr Science Editor. 18% of patients with ME, no patients with severe ME are seen there either, because you have to get there and even if you would be able to get there, they would exclude you, because you can’t walk. But anyway, before CBT 18% of patients worked, after CBT only 14% was still at work. Would you call that effective treatment??? And keep in mind that another CBT KINGDOM says we CURE 69% of ME patients with CBT. So that would mean that if 18% works before treatment that 18 plus 69 = 87% should work after treatment. Simple, a seven year old child could do the maths. But NICE couldn’t, the BMJ editor couldn’t, and you apparently can’t either. Now 87% sounds different than 14% doesn’t it? So how effective is your CBT treatment really?? And why are you NOT writing about these major inconsistencies??? Yes I know, you think that if the CBT KINGDOM says something, that you believe them at face value. Modern journalism, what a delight.

But your title was spot on: Cognitive behavioural therapy: Junk medicine at the festival of Science.

Saturday, September 15, 2007

People with ME and Dr Speedy are not the only ones having major problems with NICE guidance at the moment.

Just have a look at the following letter in a recent edition of the British Medical Journal by Dr M G Coulthard, a consultant paediatric nephrologist (kidney specialist) from the Royal Victoria Infirmary in Newcastle NE1 4LP:

The guideline from the National Institute for Health and Clinical Excellence (NICE) on urinary tract infections (UTI) in childhood was welcomed by the BMJ.

Most readers will assume it was based on evidence correctly analysed by medical statisticians, robustly peer reviewed, and openly debated.

As this is a controversial subject, dependent more on small studies than randomised controlled trials, many will imagine that it represented consensus following wide consultation, as stated. Sadly, all these assumptions are wrong."

The NICE guideline committee signed highly restrictive secrecy agreements, and its two paediatric nephrologists did not consult with the British Association for Paediatric Nephrology, whose members hold diverse views. I was a peer reviewer but was not treated as one.

My first draft review identified major flaws, was supported by the association, and delayed publication by six months.

However, I was allowed to see the committee's adjustments only after strong insistence, signing . . . [Full text of this article].”

So as I said before, they call themselves the Institute of Excellence, and now I also know in what.

They are an Institute of Excellence in producing worthless guidelines. And as they are part of the NHS, see their logo, that means the Government is paying them.

Oh dear oh dear.

So are they following the Government’s instructions or are they just pushing their own ideas in the name of so called Evidence Based Medicine, without any open discussion/critique or input from real specialists???

Worthless and full of vested interests is what this is.

A shame really.

Or as another consultant put it: "How much money was spent in formulating these inadequate guidelines? The NICE process does not appear to be very transparent or accountable.

This is a serious issue of national importance - if all NICE committees operate in this way this requires investigation at the highest level if patient care is not to be compromised in the future. "

The Dr Speedy ME Guidelines are a million times better and didn’t cost that much. But critical reading, using REAL experts and using common sense are certainly not the flavour of the month at NICE.

So not really gradually. Furthermore, illness model of deconditioning is psychobabble for lazy patients who don’t want to exercise and so their stamina has decreased.

Exercise intolerance means that you have a medical problem which prevents you from doing exercise. So the two contradict each other.

Either you are lazy and you don't want to exercise or you can’t because of a medical problem.

But write it in psychobabble and no one will notice that it can't be both at the same time.

Would I be able to participate in this trial?

No, of course not. Patients who really have ME, and who are waiting for proper therapy since Dr Ramsay first described this Illness in 1955, are obviously excluded.

On what base?

Well, if you want to participate you have to be able to do the following test at the baseline visit as they call it:

“The six-minute walking test.”

And patients with SEVERE ME are lucky if they can walk to the toilet and keep some form of independence.

So people like me would NOT even get through the door.

Just to give you an idea who is running this trial:

The top dog is working for a “Department of Psychological Medicine”.

The second in command is working for a “Psychological Medicine and Symptoms Research Group” (run by the infamous CBT professor).

The third person you can find at the “Academic Department of Psychological Medicine”.

Number four is based at the “PACE Trial Coordinating Centre,” which is part of the “Centre for Psychiatry”.

Their “focus of research is on social and epidemiological psychiatry.”

And the last man on the leader board is working at the “Mental Health & Neuroscience Clinical Trials Unit (MH&N CTU), Institute of Psychiatry”.

If you look the top dog up, you will find on the site of the department where he works that:

"The focus of the Centre for Psychiatry’s research is on social and epidemiological psychiatry."

Now please keep in mind that ME is a NEUROLOGICAL disorder, see the WHO (World Health Organisation) ICD (International Classification of Diseases) book.

I have now send him a letter, asking if he would be willing to lead my NICEGUIDELINES BLOG Trial about RATT (Ruptured Achilles Tendon Therapy), as I think this study should be done by a psychiatric department.

Don't you think??

Further interesting gobbledygook is found in the study protocol or trial manifesto:

“Patients who are considered by the RN (the research nurse), in discussion with their centre leader, to be unable to do one or more of the trial therapies or to complete all trial measures or for whom participation in the PACE trial would be inappropriate to their clinical needs (e.g. someone with significant post-traumatic stress disorder)” are not allowed to take part.

I thought this trial was about ME, but apparently they can’t even diagnose ME properly and distinguish it from PTSD (post-traumatic stress disorder).

So, a really great team.

But they have more rabbitsin their big hat.

How about this one for example:

“A recent study has suggested that there is little difference in the cost-effectiveness of CBT and GET for chronic fatigue in primary care, and both were more expensive and more effective than standard care [20].

However, only one-third of patients in this study had CFS/ME.”

The name of the study: “Cost-effectiveness of cognitive behavioural therapy, graded exercise and usual care for patients with chronic fatigue in primary care.”

This study was run by a guy (?? Psychiatrist) from the "Institute of Psychiatry, King's College London, UK"; and that is you guessed it right, the CBT KINGDOM.

So let me propose a study about patients with a ruptured Achilles tendon, and then I will see what is better, the conservative approach, the 6-weeks in plaster or an operation.

I publish my report, which is then used as one of the reports to say that RATT (Ruptured Achilles Tendon Therapy) treatment is great and cost-effective. Even though it is more expensive.

HOWEVER, someone from the same institute, where I work, then starts another study and writes down that:

“only one-third of patients in this (my) study had” actually a ruptured Achilles tendon. So I only had the diagnosis right in ONEout of THREE patients.

Would you then come to me, if you had an Achilles tendon problem and say, look, this is the best guy in the business, working in the best centre in the world??

And that is what I mean, when I say that critical reading is NOT something you are learned to do as a doctor, and even the editor of this journal published a paper that did NOT even get the diagnosis right.

SO WHAT IS THE POINT IN PUBLISHING SUCH AN ABYSMAL STUDY AND BELIEVING THE RESULTS?????

Either the editor was asleep or he doesn’t know what critical reading is.

But isn’t that his job??

As patients we have been saying for years, that the psycho people from the CBT KINGDOM have no idea what ME is and that they can’t diagnose it.

Not only do they think it is PTSD, even a first year medical student knows the difference, but now they publicly state that, only in ONEinTHREE patients with ME have they got the diagnosis right.

So please Mr NICE, was this what you called evidence based CBT for ME? I must say, you’ve just made my day.

What a whole lot of baloney, and you get paid to write this and report about it as well. Must be really great.

What would you say if David Beckham scored ONE out of every THREE penalty kicks as a manager or as a supporter of that club???

Would you be cheering him on and begging him to continue, or would you say, we get someone who can actually do the job properly???

Thursday, September 13, 2007

1. Listen to your patient2. Take a proper history3. Examine the patient4. Request some (lab) tests, see Australian or Canadian guidelines5. Use page six of the Australian Guideline, an easy to use tick chart, to diagnose ME, or not, available at:http://www.investinme.org/Documents/PDFdocuments/c6a_mecfsguidelines.pdf6. The sooner you make the diagnosis, the better the outcome7. Answer all the questions your patients asks, if you don't know the answer say so.And your reward: a happy patient as he now knows what is wrong with him. Even though ME is not a NICE disease.

Remember, you are a doctor, and your job is to help patients,NOT to accuse them of lying.

Forget about GET and CBT, it doesn’t work for MS; and it doesn’t work for ME.But do consider consulting a good psychiatrist to exclude mental health problems like depression, burn-out etc., as these are usually treatable, and there is NO CURE for ME as yet, as long as we keep pumping money down the CBT drain.

An internet friend with ME, has mailed me his response to the BMJ NICE editorial. It was rejected, or should I say, not placed. Why? Well that is quite easy. He used to be a happy, sporty, good looking guy he assures me, until he was struck down by ME. But to make matters worse, he also has a name that people keep making fun off. If you see him or mail him, please don’t do this, as he is sick and tired of hearing the same joke over and over again. What is his name? Simon Wessely. Not the CBT delusional fanatic, but a normal, likeable GP, who is now dependant on his elderly parents and carers. If you want to cheer him up, you can reach him at: simonwessely@yahoo.com

I will place his response below, as I can't see any words in it that would be offensive or so. Far from it. Another sign that the BMJ is not unbiased at all. See for yourself.

"THE (ME) WORLD ACCORDING TO NICE:

Why is it that GET (Graded Exercise Therapy) is mentioned but has no one at Nice heard about the threshold phenomenon? When I was fit and well I could train and improve my stamina by increasing my training with a maximum of 10% a week, so I wouldn't get injured and I completed a marathon in just over three hours. And I have kept fit my whole life, just because I like sport. The trouble with ME is that you can’t increase your stamina. My body tells me exactly what the threshold is. And the only one who can change this is my body. I have seen some other symptoms decrease or disappear and I hope the same will happen to this threshold. Obviously I have tried the same principles I used in running to increase my threshold since I have ME, but every time I do so, things get a lot worse. At the moment I can manage to walk the enormous distance to the toilet and back. But only once an hour. If I do it twice, a one hundred percent increase, the pain is so extreme, that even a piece of paper on my legs hurts a h… of a lot. GET is a very quick way though to know if someone has ME. If they can train and improve, they don’t have ME. The trouble though is, that it is very easy to get a relapse due to GET, and get a lot worse. So GET is NOT a good idea if you really have ME. I welcome advice by an institute as NICE about a disease. However, there are too many guidelines for busy GPs to read. The problem is, I’m having time, and my brain is starting to work again, so I can have a lookat these guidelines, even if this takes me days.

I’m one of those doctors with ME, and like many others I was taught that ME didn’t exist. So then to be diagnosed with ME was a bit of a shock to put it mildly. Before I fell ill, I have never been to my doctors but still, that didn’t mean that I was taken seriously. Interestingly enough one of them is a GP trainer, but even that didn’t help.

Reading your guideline all you need to have to diagnose ME is tiredness and a sore throat.The Oxford criteria said: tiredness.CDC/Fuduka said: tiredness plus a minimum of 4 out of 8 listed symptoms.The Canadian and Australian Guidelines speak of a whole list of symptoms and it seemed that finally we were separating ME from other illnesses. And I’ll show you why this is important.

I have been confined to my bed for a long time with extreme muscle pains and cognitive dysfunction, such as difficulty with information processing. In reality this meant I could not read, use the laptop, listen to music or watch TV. As I couldn’t walk as well, I have had an interesting time, just like many others with this disease. Not to mention how GPs and others have perceived me and judged me. Now as a simple GP this sounds a bit different than tiredness and a sore throat. But I might be wrong.

You say in your guideline that “Most people with CFS/ME will improve over time and some will recover and be able to resume work and normal activities.” You also say “Offer cognitive behavioural therapy (CBT)” to help coping etc. This apparently is the best evidence based therapy as you call it. The interesting thing is, Nijmegen said in the Journal called: “Psychotherapy and Psychosomatics, Vol. 76, #3, pp 171-176, in April2007:“After treatment, 69% of the patients no longer met the CDC criteriafor CFS.” So I would say as a simple GP, 69% was cured. Because if you meet the CDC criteria you have ME and once they are gone, you don’t have ME anymore. Their (Nijmegen) basis for CBT is: “Once the patient is convinced of the absence of a somatic cause for his symptoms, and is motivated to explore psychological consequences of his complaints (the first steps in CBT), he can benefit from CBT rapidly.”In your guideline though, you say, advice CBT but only to cope, so it doesn’t cure. And that is exactly what the Canadians and Australians say in their guidelines; there is no cure for ME. So as a simple GP, what are we supposed to tell the patients, does CBT cure ME or not? And if it doesn’t cure, what every ME patient can tell you, then where is the evidence from all the Nijmegen articles, to use CBT in ME?

Interesting is also the fact that the WHO classifies ME as a neurological disease and I have always learned that psychosomatics was something else. But hey, wrong again. It gives a good idea though how people perceive a ME patient.

Also, if there is no cure for ME, it is even more important to make sure that we don’t label patients, who don’t have ME, as a patient with ME. For the simple fact, that we might be able to cure them. Sounds a lot better than no cure, I can assure you.But from now on, many GPs will think, fatigue and sore throat = ME.

Another interesting thing in your guideline is the following statement: “The keys to pacing are knowing when to stop and rest by listening to and understanding one’s own body, taking a flexible approach and staying within one’s limits.” Nijmegen however states that we shouldn’t listen to our bodies because our illness beliefs are wrong. Once we overcome those, hoopla, ME gone.If you however think that having ME is the worst part, then you are wrong. It is not only the extreme pains, the noise intolerance, for example simple noises like using cutlery to eat, or a door being shut, that makes too much noise, or a brain that doesn’t function. It is not only doctors, of the seven doctors in the practice, I have now found the one who actually thinks that someone who hasn’t been to the surgery for fifteen years, and then suddenly starts coming, might actually have a problem. Silly approach, I know.

It is also interesting to see how friends and family treat you and are calling you all sorts of names, because there is no test for ME. So we are lazy, not motivated because if we were motivated, we would have been better a long time ago. And you can think of a few other things people say. Some even do it every time they see you. Great. Is that what Nijmegen et al call the secondary gains of being ill? And I can assure you, going from sporty and very active, to a life in bed, is difficult enough to accept, let alone dealing with all those other things around ME. But if you read the comments here in the BMJ, for example those TV comments, then those are a hundred times more beneficial, than that hokus pokus CBT thing. I have tried it, as I want my normal life back, but I have never seen so much silliness being sold to me as therapy for ME. The other interesting thing about CBT is that if it works the psycho people have done a good job, and when it doesn’t it is my fault. A win win situation for Nijmegen et co. And what did we tell people with MS for decades, to name just one disease where we got it completely wrong? They had a catatonic unwillingness to move. False illness beliefs, interesting concept. But why don’t we learn from our mistakes in the past? And don’t forget, even you can get ME. Even if you think it is only for softies.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.